ca125 numbers

Hi I am new to this. 5 years ago I was diagnosed wit stage 3c metastatic high grade carcinoma with features of serous carcinoma.After 2 sugarys and 8 rounds of chemo I am doing ok.my last check up showed my ca125 was 10 which is the highest it’s been since I finished treatment, the one before that was 7, I am very nervous about this but my doctors say it’s ok and not to worry,just wondering if anyone has had a similar experience.

Comments

Hello @Tara - welcome to the site. Thank you for sharing your story and glad to hear you are doing ok after those surgeries and chemo. Worry in general (and about the numbers) is something many of us struggle with from time to time. Hope you will find lots of support here around the topics.I found it helpful by asking lots of questions of my health care team and reviewing the By Your Side resource.Depending on your condition and your health care team, sometimes those numbers are only one part of the assessment tools. Do you have an outline on how the health team is monitoring you?

Thank you @Flowergirl for you kind words. I see my gynacogal oncologist every 6 months, she does an internal exam and checks my ca125 and that’s all I haven’t had a ct scan in 5 years as she states there is no need for it.

My CA125 hovers between 8 and 10 - both of which my oncologist is very happy about. Cause for concern is when the number rises significantly - doctor says if that happens they will test again within a couple of weeks to see if it remains higher. Then the investigation begins.

Hi @Tara. It is common for women to be concerned about test results so you are not alone! A CA125 reading can fluctuate from time to time and a reading under 35 is considered normal. There is lots of help on this site if you have other questions or concerns!

Beware that ca125 numbers are not always a valid indicator. I had this blood test done about 6 weeks before hysterectomy surgery. Surgery found ovarian cancer, stage 1C, but the ca125 number was in the normal range.

Yes, thank you @Jan for that insightful comment - it is important for those out there that have not officially been diagnosed, are experiencing symptoms and to perhaps "educate" or remind their doctors.

Anything under 35 is good.. I know for some people this test is not always valid but for others it is a good marker .. For me it has always been good.. My original numbers were 2800... Then after surgery and chemo the were always between 9 and 13... last year they went to 48 and I had CT scan .. They found a spot and I had surgery and they removed 5 nodules.. No chemo and my numbers are back to 9.. Good marker for me.. try not to worry Under 35 is good

Sure. I was diagnosed in 2012. Stage 3 High grade serous carcinoma. I had chemo then surgery then more chemo. All was good until last year. But after surgery again I am back in remission. I just had Genetic testing done 2 weeks ago. I consider myself to be very lucky.

Thanks @irishsurvivor for that info I was diagnosed in 2013 stage 3c high grade serous carcinoma also had surgery then chemo then surgery and chemo again also did genetic testing and I was negative which I was so grateful for as I have a daughter and was so worried for her. I would appear we have had a similar journey.

Yes I was very worried about the testing as my brother had be diagnosed with prostrate cancer 10 years before my diagnosis but thankfully was negative and I hope you also have a good result I know the waiting is worrisome. No I have not done the walk but would love to do it this year.

@irishsurvivor yes had treatment in Barrie with Dr Sarah Rask and surgery at Toronto General hospital with Dr Sarah Ferguson I hope to be at the walk in September are you part of a team doing the walk.

@Tara. Yes my team name is Sullys Striders. Sully for my maiden name O’Sullivan of course. Thank you I am staying positive. Every day is a blessing. We get through it and come out a different person on the other side. Good to have people to share with that know how it feels.

My sister recently moved to Alberta. She is an OC survivor. She registered at the Cross Centre in Edmonton for them to take over her care from Saskatchewan. They told her on her first visit that Alberta Health no longer does CA125 testing. They told her that “on average” it doesn’t make a difference in overall survival. She was floored. Did she misunderstand something or is this accurate? Because she is in remission they said they won’t use that test. Can anyone shed any light on this please? I am still being treated in Saskatchewan and still receiving this test. Thanks.

@dmas125 If I understand correctly the CA125 is not a very reliable test for some women because they do not show a sensitivity to whatever is being tested in the CA125 test. Many women have normal numbers under 35 but still have ovarian cancer at some point found through other ways when symptoms show. That is one reason why it is not caught early. If it does not show a sensitivity some doctors will not bother using it. My CA125 reading appears to be very sensitive and hits the thousands before treatment. I have recurred. But it is so high it is a bit strange. The doctors use the trend not the number. That may explain why it is not being done in Alberta. So inaccurate and unreliable in cases.

If your sister's numbers show sensitive then maybe she can have it done on her own and pay for it in Alberta. Before I was diagnosed I had it done in Ontario as part of a checkup and I had to pay for it. It cost about $25-$35. Cannot recall.